Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
Any one on this?
Some info on me...I was diagnosed last April. Did Rebif, Copaxone with no changes hust had several relapses... Fatigue memory & balance issues. Tested for the antibodies to do Tysabri infusion... Tested positive. Had a great first infusion only to have a horrific experience for the second. Which I got benedryl, Epi-pen some other drug & oxygen treatment & oxygen quickly i must ad... Level 3 out of 4. Needless to say we are now going to try the Gilenia starting in June. But presently having 5 days of steroids to have some strength again. But I am in need of knowing if anyone else is on this drug. I'm scared & tired of having had a downhill slide since April of last year. Not to mention on top of it all I lost my job & have been on unemployment for 5 months! This just sucks!
Please let me know any news.
Amy
Some info on me...I was diagnosed last April. Did Rebif, Copaxone with no changes hust had several relapses... Fatigue memory & balance issues. Tested for the antibodies to do Tysabri infusion... Tested positive. Had a great first infusion only to have a horrific experience for the second. Which I got benedryl, Epi-pen some other drug & oxygen treatment & oxygen quickly i must ad... Level 3 out of 4. Needless to say we are now going to try the Gilenia starting in June. But presently having 5 days of steroids to have some strength again. But I am in need of knowing if anyone else is on this drug. I'm scared & tired of having had a downhill slide since April of last year. Not to mention on top of it all I lost my job & have been on unemployment for 5 months! This just sucks!
Please let me know any news.
Amy
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
I understand, i've been on Copaxone (twice, didn't work either time), Betaseron (starting showing antibodies), and Tysabri (lymph node reaction that resulted in surgery). Very frustrating when you can't find what works for you.
I just started Gilenya on 5/3. So far, no adverse reactions except a little stomach upset (minor) and difficulty sleeping (might be unrelated). I don't know yet how it's working, i'm sure it'll take some time to "kick in".
Good luck!
On a daily basis it's been great, no different than my fish oil and vitamin D. Blood tests revealed both heightened liver enzyme levels at around 5 weeks that resolved on its own and later on a couple episodes of a lymphocyte count that was too low. For that I got pulled off for about ten days and my body corrected the counts on its own.
I get my first MRI since gilenya Monday and see my neuro for follow-up the next week. I'll be posting results. My research nurse is all geeked out about it and that's kind of making me excited too.
Like I tell everyone, msworld.org has a much more active subgroup devoted to just this topic. You see a lot more of people's experiences, both the good and the bad.
Keep us posted on what you decide to do!
You ladies are giving me some hope. I am almost done with the steroids... Talk about emotional & being flushed red; this has been a roller coaster for me.. I'm trying to calm myself down... I don't know if it's the drugs but my chest is tight and I'm tired. Could also be the damp weather that messes me up too... I think it is. Ive gotten use to the pins & needle pain in my arm... I so much want toget back into my routine to exercise again!
I'll be back in touch later... Off to nap.
Steroids are the worst. Hope you feel better soon.
I just want to get my system cleaned out, and get on the path to feeling good. I did force myself to walk today though. I hope to go tomorrow.
Thanks for hearing/reading my ramblings.
Amy